Responding Flexibly to the Complex Problem of Chronic Pelvic Pain: Incorporating Patient Needs Into Program Development

Abstract

Background: Chronic pelvic pain (CPP) in women is both common and disabling, and access to interdisciplinary care is limited. Patient education programs may represent a pragmatic approach to delivering interdisciplinary care, but to date the specific educational needs of patients with CPP are unknown. Method: We surveyed 136 patients at a tertiary CPP treatment center to identify their educational needs and preferences; 71 (52%) completed surveys. Based on the results, we developed an interdisciplinary educational program, including expert presentations and an extensive participant handbook. We modified our program to a webinar format following the advent of COVID-19. Participants registered for the webinar only or for our study involving completion of three measures of pain-related functioning before and 2 months after the webinar. Results: Our survey results indicated that CPP patients were most interested in learning about the diagnosis and treatment of CPP, coping with CPP, and diet and exercise in the context of CPP; patients also indicated a preference for brief, one-time programs. Of the 164 webinar participants, 64 (39%) enrolled in the study and completed baseline measures; 20 (31%) of those returned follow-up measures 2 months after the webinars. Participants who completed follow-up measures reported significant reduction in pain-related interference; no other significant differences were observed. Participants who completed feedback surveys were positive in their evaluation of the program. Conclusion: Patients with CPP desire more knowledge about their complex symptoms. Addressing their specific needs through educational supports may enhance their ability to manage their symptoms independently